PAP for Children With DS and OSAS

NCT ID: NCT04132999

Last Updated: 2025-08-12

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

86 participants

Study Classification

INTERVENTIONAL

Study Start Date

2021-03-01

Study Completion Date

2026-01-01

Brief Summary

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Determine the efficacy of family-informed intervention (INT) vs standard clinical care over a period of twelve months in children with obstructive sleep apnea and Down Syndrome.

Detailed Description

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Evaluate the effect of PAP adherence on quality of life, neurobehavioral, and healthcare utilization in children with DS and OSAS. It is being hypothesized that, irrespective of study arm, increased PAP adherence will be associated with better quality of life, neurobehavioral, and healthcare utilization outcomes.

Evaluate the effect of PAP adherence in children with DS and OSAS on patient-centered outcomes and family-relevant outcomes identified during the R61 phase of this research. It is being hypothesized that irrespective of study arm, increased PAP adherence will be associated with better patient-centered outcomes, and family-relevant outcomes identified during the first year of this research.

Determine the efficacy of INT vs. CON in promoting PAP adherence. It is being hypothesized that that children receiving INT will show significantly increased objectively-measured PAP adherence at 6 months compared with those receiving CON (Aim 4A). As a secondary aim (4B), it will be evaluated whether the improved adherence is maintained over 12 months. It is being hypothesized that participants initially randomized to the INT arm will have better adherence at 12 months compared to those in the CON arm.

Use mixed methods during the randomized controlled trial to identify family perceptions, such as empowerment and self-efficacy, regarding PAP use in youth with OSAS and DS. It is being hypothesized that INT-PAP will be associated with more positive perceptions compared to CON.

Conditions

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Down Syndrome Obstructive Sleep Apnea

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

family-informed intervention (INT) vs standard clinical care (CON).
Primary Study Purpose

TREATMENT

Blinding Strategy

TRIPLE

Participants Caregivers Investigators

Study Groups

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Family-informed intervention (INT)

Multiple face-to-face visits, telephone calls and-person visits with the PAP psychologist and team.

Group Type ACTIVE_COMPARATOR

Family-informed intervention

Intervention Type BEHAVIORAL

Multiple face-to-face visits, telephone calls and-person visits with the PAP psychologist and team

Standard Clinical Care

Support which is given as part of the standard clinical care for patients who are currently prescribed PAP.

Group Type ACTIVE_COMPARATOR

Standard Clinical Care

Intervention Type BEHAVIORAL

Support which is given as part of the standard clinical care for patients who are currently prescribed PAP.

Interventions

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Family-informed intervention

Multiple face-to-face visits, telephone calls and-person visits with the PAP psychologist and team

Intervention Type BEHAVIORAL

Standard Clinical Care

Support which is given as part of the standard clinical care for patients who are currently prescribed PAP.

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Clinical referral for PAP initiation to treat OSAS
* Ages 6-18 years
* Children are able to cooperate with testing
* Naive to PAP treatment

Exclusion Criteria

* Major illnesses, such as leukemia or severe cyanotic congenital heart disease listed for cardiac transplant.
* Family planning to move out of the city within the next year
* Children in foster care
* Child with previously treated with PAP
* Caregivers who do not speak English well enough to complete behavioral and performance measures.
Minimum Eligible Age

6 Years

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institutes of Health (NIH)

NIH

Sponsor Role collaborator

National Heart, Lung, and Blood Institute (NHLBI)

NIH

Sponsor Role collaborator

Children's Hospital Medical Center, Cincinnati

OTHER

Sponsor Role collaborator

University of Pennsylvania

OTHER

Sponsor Role collaborator

University of Miami

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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University of Miami

Miami, Florida, United States

Site Status RECRUITING

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Site Status RECRUITING

The Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status RECRUITING

Countries

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United States

Facility Contacts

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Ignacio E Tapia, MD

Role: primary

305-243-5393

Winnie Chauvel, BS

Role: backup

305-2435393

Stacey Ishman, MD

Role: primary

513-636-4944

Suzanna Hicks

Role: backup

(513) 636-4944

Melissa Xanthopoulos, PhD

Role: primary

267-426-5842

Ruth Bradford

Role: backup

(267) 426-5747

Other Identifiers

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R61HL151253-01

Identifier Type: NIH

Identifier Source: secondary_id

View Link

R33HL151253

Identifier Type: NIH

Identifier Source: secondary_id

View Link

20230780

Identifier Type: -

Identifier Source: org_study_id

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